Lymphangitis carcinomatosis is a rare condition when there is cancer in the lymphatic system of the lungs. It can cause a range of symptoms such as the cough, pain,and shortness of breath as you have experienced but other conditions can also cause these symptoms. It can sometimes be difficult to see on imagining techniques which may be why it's been difficult to say with any certainty that this is the cause of your symptoms. If it is hopefully these will improve with the capecitabine treatment you are now on as you say.
It's natural to wonder about how this may impact on your prognosis. When cancer has spread to other organs like the lungs, the aim of treatment is to control the cancer, prevent further spread, relieve any symptoms, and maintain health, wellbeing and a good quality of life for as long as possible.
Your doctors are the best people to speak to about your prognosis. They know all the aspects of your individual situation and can provide the most accurate information. However, it can be difficult for anyone to say with any certainty what the outlook is like for you. Dealing with the uncertainty it brings can be particularly difficult.
With rarer conditions it can be difficult to find someone who has a similar diagnosis, but you may find it helpful to connect with other women who have secondary (metastatic) breast cancer. You can do this through the range of services we offer.
Please do call our Helpline to talk all this through. We often find we can help people more by speaking to them on the phone. Your call will be confidential, and the number is free from UK landlines and all mobile networks.
The number is 0808 800 6000, (Relay UK-prefix 18001).
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Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.
Hi, I’ve been under the respiratory team since April for chest symptoms of intermittent chest pains and shortness of breath. They were unable to identify a cause but ruled out infection and a range of autoimmune diseases and started me on steroids. In the meantime I noticed lumps to my right supraclavical node and chest wall which lead to my diagnosis of TNBC secondary breast cancer ( my primary was treated 2019/2020). Now the radiologists are thinking my chest symptoms may be related to the cancer (previously I was always told there was no evidence of cancer). My oncologist has mentioned lymphangitis carcinomatosa as a possible diagnosis. I have started capecitabine this week and understand that if cancer is indeed the underlying cause of my chest symptoms then hopefully chemo will help. I just wanted to know more about what lymphangitis carcinomatosa is and how it could affect my prognosis. I am having difficulty finding anyone familiar with the condition. I have googled it and it looks grim. If my cancer is in my chest nodes and vessels then does that mean it is very likely to travel around to other organs?